The beauty of raising a genetically-enhanced child - not many people can brag that they have an extra chromosome... Follow the journey of our first-born son, Sheridan Michael, as we travel down a path that looks different than what we imagined, but is far more incredible than we could have ever hoped for.

24 October 2010

This weekend Sheridan and I took a trip to the grocery store (who am I kidding, we go almost every day). As I was lifting Sheridan out of the basket to put him in the car, I overheard three women in the parking lot talking (loudly) about their children, and about their pregnancies with said children.

One woman offered up, laughing, "My sister wanted her girl to be pretty. I didn't care about that. I just wanted my daughter to be smart. Please, God, let her be smart."

The other women laughed in agreement.

My heart sank a little. I was so disappointed to hear her say that. I might have even been a little mad, because of the inherent importance and superiority it displays of "smart" children over "not-as-smart" children.

But really, who doesn't hope for that? I had to check myself and cut the woman some slack.

Those women all had very natural, expected desires for their babies. I mean, really, who proclaims, "Please let my child have below-average intelligence"?

I know for a fact that Gary and I hoped - expected - our child to be intelligent. Most people do. Just like everyone hopes to have a "healthy" baby (which means overall general health, and also means no spina bifida, no Ds, etc.). Can I blame them (and us) for that? Absolutely not.

But it is an example of how we, as a society, place importance on - even rank order, if you will - human life.

But most people will not see Sheridan as smart, they will only see his diagnosis. And his intelligence doesn't even matter. He's brilliant in many ways... his musicality, his empathy, his kindness, the list goes on... and so many people will miss all of it.

Yes, it is their loss, but in some ways it's ours (and especially Sheridan's), too. How many opportunities will he be denied because of traditionally narrow definitions of intelligence, and society's easy dismissal of those who who have an intellectual disability? It hurts me to the depth of my soul to think of others marginalizing Sheridan. Pushing people with intellectual disabilities into invisible shadows.

I have no doubt that if the woman in the parking lot had a child with Ds, she could rise to the occasion and would have a different perspective on her comment.

And just to keep it real here... as I mentioned, I'm not immune to these perceptions myself. On Sheridan's very first IFSP (when he was only a few weeks old), we were asked what our biggest concerns were. What were our biggest priorities? Here was our response, as written by Sheridan's service coordinator:

cognitive development

A whole big box full of room to list concerns, and that was it. Two words. The biggest concern for us at the top of heap.

The telling thing is, those two words haven't made the top of the list (or even been written in that box at all) since then.

[As an aside, all these thoughts, observations, and realizations remind me of a great post and the discussion that ensued (read the comments following the post).]

22 October 2010

Last weekend was the sixth annual walk for the Down Syndrome Information Alliance. Step Up for Down Syndrome is our way to raise awareness, advocate, and get the whole community together.

Last year was our first walk we ever attended, and this is how many of us "Sisters" there were (well our babies anyway!):

Look at those babies!

That's it. We knew four other families, and met Grace (far left) and her family for the first time at the walk last year.

And now? We have over 30 families in our Sisterhood... and I couldn't even get a picture our group was so big and scattered!

But here's what I did capture... FYI, the pics aren't very good this year - my camera is on the fritz and I was working the event so I barely spent time with my team, a mistake I won't make again next year :)

First, I have to share the DSIA walk t-shirt design (a big thank you to designer Carrie Dennis who made my vision for a great t-shirt come alive!):

Sacramento Fire Department came out to support our community, and Sheridan was thrilled with the fire trucks (especially those HUGE shiny wheels).

We started in the middle of the pack (you can easily spot Team Gabalicious in their orange and purple get-ups).

See those balloons? Those belong to a few Sister families who formed the Sisterhood team (some of us did our own teams, some joined as one huge consolidated team - it was awesome!).

The coolest thing... this was Sheridan's first year he walked the walk.

Holding Nonna's hand.

Of course, his Becca was there to support him

And look who else walked her first walk! Grace!

And I do mean that she *literally* walked the whole walk.

She lasted about 5 seconds in Sheridan's stroller before she insisted on walking again.

Although at one point she did decide to take a break. Just plopped herself down where she pleased.

Sheridan walked maybe a third of the walk (on and off throughout the whole mile), but he was just as happy riding on Nonna's shoulders.

And he was eager to help Wes push his baby sister.

All in all it was a great walk. We raised money for an excellent organization that does so much to support the Ds community here. And we were thrilled to have so many friends and family (37!) come out to support Sheridan (and the entire community!) again...

Thank you to team GENETICALLY ENHANCED!

P.S. you know those babies I showed you from last year? FIVE of them walked the walk this year for the first time :) - and the youngest is on his way to walk-hood :)

19 October 2010

Today I took Buddy to a H-U-G-E pumpkin patch today. And some of his friends met us there...

He was stoked and ready to go (it might have something to do with the fact that I made up a silly song about going to the pumpkin patch and sang it the whole way there - hoping I wasn't over-promising the experience).

I had a cute fall-colored outfit ready to go, but Gary vetoed any outfit with orange. Apparently one is not to wear orange at a pumpkin patch for fear of the pumpkins competing with your stylishness. Whatever. Sheridan looks good in any color, so bring on the purple!

Aaaaaaaand he's off...

Of course, one must always check out the Cool Bus. Especially when you're totally cool.

He found his pumpkin in 15 seconds flat...

but I encouraged him to keep looking for something a little more, um, manageable...

Much better! Of course, I planned for us to pick out a pumpkin in the field, so we left this one here just in case he didn't find another one that lived up to his expectations.

But first, a train ride.

Waiting patiently for the train...

We all piled in...

We were there with Annelies & Marco, Gracie & William, RJ (a recent addition to our local group here!), Joaquin & Sofia, and other friends/family.

Meet little RJ and his mom Irma. Such a cute little guy... and so glad to have Irma in our Sisterhood!

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